Family and Caregiver Schizophrenia Discussion Forum

Treatment Plans: Lessons Learned

It seems like there is a lot of misunderstanding about treatment plans and the roles the diagnosed person (DX’d), family and doctors play in ensuring treatment and effects are communicated, managed and followed up on.

I’m going to throw out my opinions here a lot, so forgive me if some details seem very particular.

First of all, I think a lot of patients and families treat the Psychiatrist as a primary care doctor. Keeping them on call and setting frequent appointments, even when the psychiatrist seems to believe fewer appointments might be equally helpful from their perspective.
I have seen my DX’d brother struggle to get prescriptions refilled due to a delay in being able to meet with his Psychiatrist pretty often. This could easily be resolved by meeting with a primary care physician (PDOC), who is a general practitioner, but more readily available and also directly involved in the treatment plan.
Going without a pdoc means that when the psychiatrist is otherwise occupied (they have -a lot- of patients!) and he needs a medication refill in a hurry, my brother has to resort to waiting in a minute clinic (also known as urgent care), where he spends a lot of extra time describing his circumstances in addition to long waits to be seen. All of that could be a simple phone call to a friendly neighborhood pdoc.

Therapy seems to be vital. I’d recommend a combination of group and one-on-one therapy. Everyone is a little different and some people have a hard time opening up, especially about something so profound as Sz/SzA. Group has helped my brother to feel like his problems are not too taboo to speak about, individual therapy has helped him gain targeted, structured discussion about his struggles. Often times, he comes away from sessions with a renewed sense of being capable of managing his symptoms better and a set of goals to work toward. Also, he sees how other people with similar struggles interact and talk about it. There are both good and bad examples, which reinforces his determination to press on with treatment and retain as much of his independence as possible. It’s inspiring to hear him talk about his therapy. Not only because it helps him so much, but because it reminds me that it is always worth trying for self-improvement. We all deserve to give ourselves a chance at ‘better’.
Going without therapy, it’s obvious with hindsight that my brother had a hard time knowing how to talk about his disorder and the symptoms, along with all of the emotions and struggles that seem to naturally come with it.

Administered medication is better than a person who is struggling almost constantly attempting to manage their own medication. It seems that deciding to take medication is one thing for DX’d people, but deciding to ensure that it is taken exactly as prescribed at the exact right time is another issue entirely. My brother as proof that it is extremely difficult to keep track of many different medications simultaneously. It seems like having a teammate that helps count and organize medication helps, but ideally, someone else would help administer all meds. A single difficult day which leads to distraction and a single mismanaged dose can potentially lead to weeks of hardship. Most medications for Sz/SzA take a month or more to reach an effective level within the DX’d and a fluctuation in that level can cause harsh side effects, withdrawal symptoms and trigger symptoms of the disorder… Even all at the same time. If I could have my way (which I can’t), my DX’d brother would have a registered nurse visit twice a day to help administer the more powerful medications. It might not be so important for meds like nausea, which simply manage side effects, but it seems necessary to me to make sure the more powerful meds are tracked and taken precisely.
Going without has caused a lot of unnecessary hardship for my brother and it’s possible that some of his visits to the emergency room for psychological distress could have been avoided entirely.

Family involvement seems just as important as the rest of the things I’ve written about. Not everyone has to be unified in their opinions about how best to help in every scenario, BUT: each family member should adopt the stance that support, encouragement and consistent, even tempered conversation comes before all else. In general, we all want our DX’d loved ones to be able to take care of themselves and have good opportunities to pursue in life, work and love. We want them to be able to feel contentment and satisfaction in their daily lives. When it comes to specific points on which we disagree, it’s more important to make open discussion about Sz/SzA and treatment a positive experience than it is to get our point across. The common ground is the good intentions and the support for our DX’d loved one, build on that!
Alienating family because there is a disagreement about treatment options is a tough situation to be in. Especially when both parties genuinely want to help the DX’d. Rather than sticking to our guns and squaring off about treatment options, we can instead tag along with our DX’d to appointments with doctors and attend family member therapy (either in person, remotely, or on a forum). Asking open-ended questions to doctors involved directly with your loved one’s treatment can help, as long as they are not simply intended to reinforce one’s own opinion;
“Do you really think medication is necessary?”
“Would commitment in a residential treatment facility be a good option for my DX’d loved one?”
Especially when asked of the doctor who is directly involved in making those types of decisions, questions like that give the doctor an opportunity to shed light on why they have recommended certain treatment options specifically for your loved one. They may also help point out facts or circumstances which might not have been obvious to us.
Refusing to find a way to align together to help support our DX’d loved one, or independently pushing our personal opinions on each other breeds conflict. It can be just as detrimental to have a group of people who refuse to address the diagnosis as it is to have multiple people attempt to ‘lead the charge’ without adequate knowledge and guidance from an expert like a psychiatrist. I’ve seen the kind of conflict that it creates and the bottom line is that it doesn’t help the DX’d at all, worse it can fragment an otherwise effective support system.

Everything I’ve written in this post is from my own personal experience and can be taken as a matter of opinion. I’m definitely not a doctor and have near-zero medical knowledge. My opinions are my own and have absolutely no bearing, implied or otherwise, on your actions. Always bring questions directly to your doctor and follow their recommendations.

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Was your brother able to find a therapy group specifically for people with severe mental illness? I feel like that would be helpful

He did manage to find a group for people with various disorders and a few of the other members have very similar diagnosis as he does.
It’s sometimes hard for him to talk to that group because they get easily derailed into the topics of videogames and movies, but when they can talk about real life it helps a lot.

I personally think that being part of any therapy group regarding trauma, mental disorders and/or anxiety is better than nothing. It helps to learn how to talk about these kinds of problems and get practice bringing up issues without having to feel like it is breaching a taboo subject.

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I am not sure group therapy would be as helpful for my daughter at least at this time… because she can feel a little anxious in social situations. She did not think she got as much from group therapy when she was in the hospital as she did the one on one.

But I do believe that everyone in the family being
Involved has been a key factor in why she is doing so well at this time. Her brother is less involved only because most of the time he is away at college… but they do spend time together just having fun when he is around.

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Group therapy is a different animal than individual therapy. They have different goals. Group therapy is more about navigating the social aspects of dealing with your illnesses and sharing experiences.

I think it’s better done after you get stable in individual therapy. But in a hospital individual time is much more precious than group time. Groups in the hospital have a captive audience-- so to speak. You just need a nurse or attendant to facilitate.

Even in a hospital setting a couple things stood out about group for me. It may seem paradoxical, but MI people are pretty good at observing symptoms and poor coping mechanisms in their peers. They aren’t so great at seeing their own faults, but they are all over other people’s issues.

They also tend to be more blunt about things than therapists. Therapists have tendency to be indirect and try to avoid conflict with their patients. Whereas group members don’t have to abide by those rules, and can challenge you more than a therapist. They aren’t trained, however, and can project their own issues onto other group members, but the group as a whole or a facilitator can referee. There’s a bit of a mutually-assured-destruction element of a group that regulates how confrontational it can get, but there can be conflicts, so you get more out of them when everyone is stable.

While I liked both, I agree you get more out of individual therapy, but group therapy can be helpful and is cheaper.

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Rather than create a million different threads, I thought I’d recycle this one. The main point is directly related anyway.

My brother seems to have progressed in his treatment past a lot of the negative symptoms and most of the positive symptoms. His medications are relatively well balanced and he is fully aware of what his diagnosis means for him personally.
But now I see a lot of similar behavior to how he acted as a child (10-18 or so)… Constant talk at a distinctly high volume about absolutely nothing in particular, other than snips of events from his past. All with a very negative spin and almost always told so as to make himself out as a victim. Being his older brother, I have either heard all of these stories before, or was physically present when they occured.
The problem is, He is obstinate, vulgar, obsessive and oppressive to be around.
He ignores all social queues of disgust (as many of his stories are packed full of profanity and center around distasteful description of various bodily functions).
He also ignores queues that people are tired of hearing him talk, tired of listening and very much wanting to change the subject to something current.
When I attempted to engage the issue directly, he would become hostile or hurt (or both).

I remember vividly the years I spent coping with this kind of behavior from him and it occured to me this past weekend that much of my quirks and triggers are related to this type of behavior in others.

To be fair, I am a talker as well. I can talk to just about anyone on just about any topic. However, I have learned to temper my impulse to share stories I think are relatable and to watch for signs that other people are done listening to me speak. Things my brother seems to be aware of, but ignore intentionally.

I know that these were parts of his personality when he was a child and he was very much the opposite when he was suffering side effects from stronger medication. I’m genuinely glad that his medication relieves his symptoms and is also very light in side effects. However, I’m wondering if this abrasive personality is just part of the healing process, or if he is becoming further unhinged and simply isn’t telling doctors or family how bad things actually are.
I know he has stated plainly that his emotions are irrational and overwhelming often. But this seem more complicated.

Anyone have a loved one who behaves similarly?